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Jun 17, 2010

We arrived home from the hospital that Sunday night well after midnight. I didn’t remember much of the ride home and was very grateful to be sleeping in my own bed. Monday morning around 9:15am my surgeon’s assistant, Peggy, called me to check how the trip to the ER had gone. I told her how disappointed I was with the care I received and that I was still leaking fluid, though not very much. Peggy was going to make a few phone calls but was pretty sure the doctor would want to see me that day, so I put a wad of tissue in my belly to catch the fluid and sat down on the couch.

Within fifteen minutes that tissue was soaked through and this time the fluid was a pinkish tint, so I was officially panicked. Immediately I called Peggy back and told her what was happening. It went from a dribble to a river within minutes. As we figured, Peggy told me to come immediately to the hospital and I was to be admitted to Physician’s Referral – which helped me bypass the incompetent ER. Brent had gone back to work for the first day since my surgery and had only been there since 9:30am so I felt bad about having to call him to come get me, but I still couldn’t drive at this point. While I waited on him I repacked all my bags for the hospital because my gut instinct told me I would be there for a couple days.

As soon as we arrived at Baylor I was sent off to Roberts Imaging to have a CT done of my belly. Dr. Taylor, my general surgeon, was in surgery at the time so we waited for a couple of hours to see him. When he finally came in, he honestly looked a little defeated – but he confirmed what I’d thought all along. My shunt catheter had moved, working its way up to the incision in my navel and was pouring spinal fluid out at an alarming rate. I had been headache-free since the day after my surgery and was only beginning to get a minor one back, but at least we knew the shunt was working! That evening I was readmitted to Baylor and a revision surgery was scheduled for the following day, Tuesday, at 11:00am.

First, and most important, was to ensure that I hadn’t gotten an infection from the negligence of the ER sending me home. The incision had now been open for almost 48 hours and if there was infection the entire shunt had to come out – even the head portion. This terrified me; I’d had absolutely no problems with the incision in my head and it was healing wonderfully. When discussing my options for the revision, I was initially given two scenarios as to what would happen. So long as no infection was present, they would replace the tubing as it was; if there was an infection, they would let the shunt drain externally for up to two weeks while I took a high dosage of antibiotics. After that time frame they’d go back in and replace it. Either of these worked for me so long as I didn’t have to have my head operated on it again. I was wheeled into holding and met my new anesthesiologist, who immediately rubbed me the wrong way, but he gave me good drugs and I don’t really remember much after I got into the OR.

When I first woke up in recovery, my immediate thought was, “What the fuck, I can’t breathe!!” I began gasping for air and crying, I could NOT figure out what was wrong. Finally the nurse came over and gave me some pain meds that didn’t do a thing for the crushing sensation in my chest. It was as if I’d gotten breast implants again, the exact same feeling. I begged for all sorts of things: a drink, better pain meds, my glasses, and to have my bed raised. The only thing I was granted was my last wish, and raising the bed some seemed to take the pressure off my chest. When I was finally able to see Dr. Taylor he explained that they had moved my shunt catheter behind my right lung – and in order to do this it had to be collapsed. Bingo! There was the source of my pain. They informed me that so long as the catheter was there my lung would remain about 5% collapsed, so even as I type that is where it stands.

Just as before, I was unable to see Brent after my surgery, only this time I spent close to eight hours in recovery. EIGHT HOURS!! No one could figure out where I belonged. Repeatedly I told the nurse that I was in Truitt 309, I had been admitted the night before and that was my room, but my anesthesiologist thought I shouldn’t be in that room. See, the hallway I was in was the ICU hallway and he didn’t think I needed to be in ICU; however, the particular room I was in was a neurology room specifically for patients at risk of seizure – NOT ICU. This conversation went on for a good hour between the staff at the foot of my bed, all the while I was crying both out of frustration and pain. The fact that they couldn’t get my pain level under control was also concerning because no matter how much they gave me nothing helped. Finally around 9:00pm I was given a PCA pump, where I would be administered Morphine every ten minutes at my choosing, as well as a breathing treatment to try and help my lungs. Once I had my pain pump in place I was sent back to my room – and I was highly pissed at the anesthesiologist.

At some point while I was in recovery I had complained about the rude doctor to Brent. Little did I know he had immediately gotten on the phone with the hospital ethics team and filed a complaint. (Let me just say that I don’t remember fully what happened that day, but I do remember him accusing me of abusing pain killers and that was why I wasn’t getting any relief from the meds I was being given – among other things.) Sleeping became next to impossible the next few days and I was having some sort of allergic reaction to the Morphine to the point I was clawing myself in my sleep. Poor Brent went and rounded up all sorts of Benedryl and Gold Bond to help me out but nothing worked so they switched me to Dilaudid, or hydro-morphone. For the next three days I sat in that bed trying to breathe and waiting on the results of the cultures from my surgery to ensure I hadn’t gotten an infection. I was taking numerous antibiotics and probiotics and by Thursday night I was on my 4th IV since I’d been admitted. Put a fork in me, I was D-O-N-E.Friday morning rolled around and my cultures were clear – no infection! There were two new incisions, one along my collarbone and one just above my navel that cut out my former belly button ring. We were given the option to stay until I felt my pain was well controlled but when that 4th IV blew later that morning, I opted to leave. I was sick and tired of the hospital and just wanted to be home in my own bed. Four days in was way too long for me and I wanted nothing more to do with the place. Brent ran a couple of errands that morning while I packed up my room to the best of my abilities. There were clothes strewn about and toiletries all over the bathroom, it was like we’d been living in a hotel for the last few days. When the orderly came to get me I loaded up a rolling cart with all my belongings (and my four pillows I’d brought) and finally got to go home.

When I walked in my door at home I cried. The dogs had been left out of their crates while we were away and not been let out regularly so they had messed all over my carpets (we had someone watching the house . . .) To top it off, Stormy, our German Shepherd had taken it upon herself to piss on our bed, in my spot. I just couldn’t take it; I thought I was going to lose my mind. Brent took all of the bedding off and moved our extremely heavy memory foam mattress off the bed and pulled in the mattress from our extra room, made the bed and put me in it. Sleeping was ridiculous as I couldn’t get comfortable on this soft mattress and I really wanted our memory foam back. Thankfully Brent was able to stay home with me for another week and make sure I was okay – plus, we’d gotten LB that Sunday after I came home and I was in no shape to care for him by myself.

It has now been six weeks since that revision and I am still having severe pain in my lung that radiates to my shoulder. After much discussion it was decided that I would have another revision to move the catheter back to my belly, only this time a little lower near my pelvis. My last MRI showed that my ventricles had disappeared and were being drained too well, given me low pressure headaches and causing the intense pain. Every time I took a breath the fluid would be pulled out due to suction instead of draining on its own. So as of right now I go back in first thing Tuesday morning to have the revision. It has been a long journey but I think I see the end. Hopefully this one will go much smoother and I should only be there a day – no collapsing of the lungs this time! Never have I been so anxious to return to normal, and I cannot wait to get back to work.

On a separate note, I will say that I have got to spend this last six weeks home with LB (he’s been here the entire time) and he’s progressed quite nicely. He is now fully potty trained with the exception of nights and he has just grown so much. I’ll be sad to see him go this Sunday but grateful for being able to recuperate alone.

Jun 15, 2010

I realize I am looooooooooong overdue for this post, but I tend to think for good reason. It’s not for lack of wanting to write it, I just know that it is going to be a long post that will take a lot of energy – something that I am trying to gain back piece by piece. So let’s start at the beginning.

On Tuesday, April 27th at 5:00am I arrived at Baylor Dallas. We had to go early so I could do a blood pregnancy test to *ensure* I wasn’t knocked up (could’ve told you THAT without the needle!) Most of my family came – my husband, my mother and her boyfriend, my mom (grandmother), my dad and stepmom, and my best friend Carly. Surgery was scheduled for 7:15am sharp so I got to spend time with and see everyone beforehand. They all did an excellent job at keeping my spirits up, because although I wasn’t scared it’s still never fun to be under the knife, especially when you’re getting part of your head shaved. We laughed and joked about all sorts of nonsense, talked to the surgeons, got the most horrific IV ever placed in my wrist, and said our good-byes. It was supposed to take about 4-5 hours from start to finish. The anesthetist was amazing; he promised great drugs with no sickness afterwards (and he delivered!). I remember the whole ride to the operating room, talking to the nurses and moving over onto a steel table with an egg-crate cushion for my head. As soon as I lay down, I was out.

When I woke up in recovery, I was cold and thirsty as I usually am, and a kind nurse was putting hospital-grade Blistex on my lips (I should mention that I now have four tubes of the stuff and it is awesome). There was goop all in my eyes much like what they put in newborns eyes and I was not pleased. I really tried to be nice but was mostly pissy because a) they wouldn’t give me anything to drink, b) I couldn’t see and wanted my glasses and c) I wasn’t allowed to see my family. Little did I know at this point that they didn’t even KNOW I was in recovery. The pain wasn’t too bad but they kept it manageable, telling me the entire time that I could only get the good drugs in recovery so they were keeping me until I was comfortable. Come to find out, the nurses couldn’t figure out where I was supposed to go – ICU or a regular room. I’d been told I was to go straight to ICU for 24 hours and then transfer to a regular room for 24 hours before I could go home, but apparently I’d done so well during the surgery that I could skip ICU altogether, YAY! Finally they let Brent come see me, bring me my glasses and give me lovin’s. After that my mom and everyone else got to come say hi before they were rushed away. All total I was in recovery for 5 ½ hours before I was finally moved to HOB 305 at almost 7:00pm.

Never had I been so grateful to be in a room. Brent and Carly were waiting for me, with a huge sweet tea. I was starving because I hadn’t eaten in the last 24 hours so the nurse promised to get me something to eat, but it took her forever so I wound up eating some leftover baked potato that Brent had brought. Finally around 9:00pm the nurse brought me some chicken noodle soup and I thought maybe I’d died and gone to Heaven! LOL After I’d eaten the nurse came by and gave me some Percocet and Morphine and I could finally sleep, which I did in about two hour intervals. I was unable to get out of bed on my own so I’d have to wake Brent to help me to the bathroom but I slowly started gaining strength. Turns out I had 17 staples in my head, about three stitches behind my ear, three stitches in my neck and some Dermabond in my navel. There were NO incisions in my belly and I was thrilled! They had been able to do that part laproscopically so I felt very relieved, not to mention lucky just based on the horror stories I’d heard. Unfortunately when the nurse brought me my pain meds at 4:00am she put them in a little too fast and I became violently ill. The poor tech had to come in and change my entire bedding and my gown at 4:30am and I was miserable.

After what I’d consider a decent night’s rest, we woke up early the next morning when my mother and Christine arrived. They visited for a while until my neurosurgeon came in and gave me the greatest news ever – I could go HOME! All I had to do was have an x-ray to ensure placement of the shunt catheter in my belly and I was a free woman. So about 24 hours after having major brain surgery, I went home! I made a whole bunch of phone calls and wrote a few emails on the way and was ever so glad to be in my very own bed. Getting comfortable was definitely a challenge but with enough pillows I was able to prop myself up and rest. That was on Wednesday, and by Friday I was ready to get out of the house. Somehow I convinced Brent to take me to Target, where I snagged a new comfy robe and some ice cream. Come Sunday I was feeling really great, still hadn’t had a headache and I was recovering very nicely, so we decided to make a short trip over to Home Depot. I picked out some new planters and we got some granules for the yard and came home.

While Brent was fixing dinner Sunday night I was laying on the couch with the computer in my lap playing on Facebook. When I moved the computer from my lap I noticed that my shirt was wet and couldn’t figure out why – I hadn’t been drinking anything super cold that could’ve dripped. From the placement of the wet area of my shirt over my navel it almost appeared the fluid was leaking from the incision in my navel, but I couldn’t be entirely sure because the shirt was dark purple and I couldn’t make anything come out. This was the first time I became nervous since the surgery. Something in my gut told me that it wasn’t right and so I called the neurosurgeon, who suggested I call the general surgeon who’d placed the catheter in my belly. I knew he was Dr. Taylor but for the life of me couldn’t figure out his first name so we just made the decision to travel back to Dallas and visit the emergency room, just to be on the safe side. We arrived sometime after 8:00pm and proceeded to wait for over 3 ½ hours to be seen. In the meantime the nurses on staff were trying to determine what was going on, and I told them that I thought there was spinal fluid leaking out of my belly from the catheter. They were absolutely clueless about the disease I had as well as the shunt, and even though they could see that when I leaned back fluid poured out of the incision, they deemed my case non-emergent and put me at the bottom of the list. This made me incredibly upset and I had a falling-out with the nurse at the front desk, as I couldn’t understand how I was non-emergent when I’d just had major brain surgery five days prior and was leaking a clear fluid out of one of the incisions. I begged them to look at my file and find my surgeon’s name, which they refused to do. Finally I called my neurosurgeon back and his amazing nurse Peggy got in touch with me (keep in mind this is after 11:00pm on a Sunday) and told me to have the nurse contact Dr. Coimbra immediately. Do you think his happened? Nope! I was finally put in a room for about ten minutes, given pain medicine and sent back home to call my doctor in the morning. This would prove to be a big mistake on the part of the emergency room staff.

About Me

I am a 26 year old businesswoman, wife and bonus mama. I was recently diagnosed with idiopatic intracranial hypertension and am now the proud owner of a VP shunt - and finally headache free for the first time in 15 years. My husband and I have been inseparable since the day we met. My stepson is 3 1/2 years old and is absolutely wonderful, and together the two of them inspire me to be a better person every day. We're hoping to expand our little family in the near future.